DISABILITY LANGUAGE AND ETIQUETTE BARKING AND DAGENHAM CENTRE FOR INDEPENDENT, INTEGRATED, INCLUSIVE LIVING CONSORTIUM AND BARKING AND DAGENHAM COUNCIL

WORKING TOGETHER FOR EQUALITY

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Introduction This booklet has come about as a result of extensive consultation and joint working with disabled people, disability organisations and the voluntary sector in Barking & Dagenham.

It is fundamental to disabled people’s lives that disability is recognised as an equality issue. This booklet will make clear the accepted language and etiquette that has been defined by disabled people.

To challenge discrimination, oppression, and stereotypes, the disability movement both nationally and internationally, has actively promoted its own definitions of disability. These definitions have been borne out of the Social Model of Disability.

Most of the information will be common sense and common courtesy. It is important to understand that there are some widely used words and phrases that give offence because they reinforce prejudice and perpetuate discriminatory attitudes and practices among the general public.

Please take some time to think about the language and etiquette contained in this booklet. We want to break down barriers, increase opportunities for learning and work towards inclusion and unity within Barking & Dagenham.

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The models of disability It was through the segregation, discrimination and exclusion of disabled people from community life, that led the disability movement to challenge the way in which people were treated and labelled by society and the medical profession in particular. The Medical Model of Disability places the problem with the individual that only a cure will solve. It denies the individual their value, worth and individuality as they do not meet the accepted ‘norms’ of our society. This model is also known as the tragedy or charity model and perpetuates how disabled people are often viewed in society. The World Health Organisation’s definition: ! Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being Medical labels are often misleading, as no two people are alike. Medical labels tend to reinforce stereotypes of disabled people as patients who are ill, powerless and wholly dependent on the medical profession. The Social Model of Disability challenges the medical profession’s definition and was classified by a group of disabled people who managed to escape from institutional care in 1976 known as ‘The Union of the Physically Impaired Against Segregation’. The definitions are: ! Impairment – Lacking part or all of a limb or having a defective limb, organ or mechanism of the body. ! Disability – The disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression. Under this classification, people have impairments, they do not have disabilities.

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These classifications do not deny the problem of disability, but locate it within society. Individual limitations, of whatever kind, are perceived as only one factor. Far more important, they say, is society’s failure to ensure that the needs of disabled people are fully taken into account in its social organisation. Therefore, according to the Social Model, disability is a social state and not a medical condition. To take into account all forms of social oppression and all impairments, ‘Disabled People’s International’ adopted and redefined the definition of disability in 1981 as: ‘The loss or limitation of opportunities that prevents people who have impairments from taking part in the mainstream life of the community on an equal level with others due to physical and social barriers’. Many organisations which are run and controlled by disabled people work within and promote the Social Model of Disability. Many Councils throughout the country have adopted a Social Model definition. Working in this way ensures equality of access and challenges discrimination at all levels within the organisation and the local and wider community. Knowing a little history of the Social Model will help understand why we use particular language and how some words and phrases are now offensive. Language Whilst it is important to have a general understanding of words and phrases which give offence to disabled people, it is also interesting to note where they come from and why. The history of disability is a fascinating one. If we understand where things come from, we can put the jigsaw together and make sense of the full picture. ! The term ‘the disabled’ implies a homogeneous group separate from the rest of society. We are all individuals. The preferred term is disabled people.

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! The term ‘the handicapped’ is offensive to many disabled people because it has associations with ‘cap in hand’ and begging. The preferred term is disabled people. ! Under the Social Model, the term ‘people with disabilities’ is incorrect as we have impairments. We are people who are disabled by the environment, attitudes, stereotypes etc. The preferred term is disabled people. ! Another example is ‘invalid’ because this equates disability with illness and can be construed as ‘not valid’ or ‘worthless’ ! A wheelchair represents ‘independence’ and ‘freedom’ and not a ‘confining burden’ as it is thought of by non disabled people. Disabled people prefer the term wheelchair user or person who uses a wheelchair. ! People with an ‘intellectual impairment’ prefer to be described as people with ‘learning difficulties’ not ‘mental handicap’. It is important not to confuse learning difficulties with mental illness. ! People who have experienced mental health problems have no one preferred ‘name’ by which to be called. The most common terms being ‘user’ or ‘clients’ of Mental Health Services. Some people who attend day centres or drop in services like to be called ‘members’. The term ‘survivor’ is not frequently used, in this area, but it is important to find how the group or person you are dealing with likes to be referred as. ! People who are deaf or blind or deaf/blind are said to have ‘sensory impairment’ either ‘hearing’ or ‘sight impaired’. People who are deaf/blind prefer ‘dual sensory impairment’. ! Often the term ‘disabled toilets’ is used, but this is inappropriate. The toilet is either ‘accessible’ or inaccessible’. ! Unpaid relatives, family members and friends are often known as Carers. This should not be confused with care workers who are paid to support disabled people and children as part of their paid work.

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! The role of unpaid family members as Carers, is in addition to their role as mother, father, son, wife, husband, partner and the term Carer recognises the extra responsibility placed on family members especially relevant for disabled children. ! Disabled people prefer the term ‘personal assistant’ when referring to paid home care workers. It is support and assistance that disabled people require from service providers, not to be looked after and cared for. ! Often the term ‘disabled parking bays’ is used at supermarkets and shopping centres. This is inappropriate. It should be ‘parking for Orange/Blue Badge Holders or ‘parking for disabled drivers and passengers’. More and more supermarkets are changing to the former through pressure from disabled people. The following list gives you inappropriate and appropriate language

Yes

Yes

Yes

Inappropriate

Appropriate

The Disabled

Disabled people

People with disabilities

Disabled people

Children with disabilities

Disabled children

Invalid

Disabled person

Severely disabled

Requires substantial or significant personal assistance

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Disabilities

Impairments (or state actual medical condition)

Suffers from

Living with (state medical condition)

Mental illness/mental health problems Living with a mental health problem or diagnosis if appropriate but being referred to by name is preferred. Mentally handicapped

People with learning difficulties

Learning disabilities

People with learning difficulties

The deaf

Deaf people/hard of hearing people (specify which group) or hearing impaired people

The blind

Blind people/partially sighted people (specify which group) or visually impaired people

Care

Personal assistance/personal support

Carers (only to be used when the individual disabled person cannot make decisions for her/himself)

Family members, relatives and friends

Carers (meaning paid home carers)

Personal assistants

Special needs

Specific requirements (state what these are)

Disabled toilet

Accessible toilet

Disabled parking

Orange/Blue Badge holder parking

Wheelchair accessible

Wheelchair/scooter user or accessible to wheelchair/scooter users

For wheelchairs

For wheelchair users

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Etiquette and common courtesies ! Do not make assumptions about an individual’s ability

to do certain things. Disabled people develop their own methods of overcoming the everyday problems they encounter. ! Do not assume that just because an impairment is not visible, it does not exist. Many disabled people with hidden impairments can experience a lot of discrimination. The majority of disabled people don’t use wheelchairs. ! Treat disabled people as you would treat any other person i.e as a woman, as a man, as a parent, as a worker. If an individual needs time to do things, be patient. ! Do not be embarrassed should you use common expressions such as ‘’see you later’’ or ‘’I might run into you’’, then realise they may obliquely relate to a persons impairment. ! Do not use behaviour more appropriate for dealing with children, e.g. literally or figuratively patting a wheelchair user on the head. ! Do not assume that an offer of assistance will automatically be welcome. Wait until your offer is accepted. Even then do not assume you know the best way of helping. Instead, listen to any instructions you are given by the expert. (The one who receives the assistance) ! Do not insult a disabled person by talking to them through a companion, ‘’does she/he take sugar’’ syndrome. ! Relax, speak normally and stand in front to allow eye contact to be made, in the same way you would when talking to anyone else. ! When making physical contact, whether verbal or body language. Respect boundaries and personal space.

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People with mobility impairments ! When talking with a wheelchair user, either get a chair or sit down or ask if they prefer you to stand or crouch. Do not tower over them, so they get a stiff neck, but stand a little away so that you can have a conversation on an equal basis. ! When visiting your building or organisation, ensure that the disabled person has clear information about access restrictions. If it is not accessible, give the person a choice of a home visit or meeting elsewhere. ! Ask a disabled person if they need help rather than ignoring them or charging in. ! If trying to find suitable venues for meetings or seminars, consult with local disabled people’s organisations who may have experience of suitable venues and their accessibility. Also contact the Council’s Access Officer. ! If access to your building is not obvious or difficult, meet the disabled person at the entrance to give assistance if required. ! A wheelchair is part of the body space of the person using it. Do not lean on it unless you would usually lean on the person themselves. ! If you wish to speak to the person who is with the wheelchair user (assuming it isn’t private), take up a position so that the wheelchair user, who may be unable to turn, can also join in the conversation and does not feel left out. ! In public places or offices, ensure that items are not left lying around on the floor. Make sure there are adequate spaces for people to get around and that access is safe for everyone.

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People with visual impairments ! Identify yourself clearly, first of all, and introduce anyone else who is present and where he or she is placed in the room. ! Ask the person if they require any assistance and, if so how best this should be provided. Sometimes the offer could be accompanied by saying something like ‘’let me offer you an arm’’. This will allow you to guide rather than propel the person. ! When offering a handshake, say something to indicate that you wish to shake hands. ! When meeting someone out of their home or working surroundings, ask what central point they are familiar with and arrange to meet them there. Please ensure you arrive at the agreed time. ! When offering a seat, speak the person through the process (chair on right, left, back of you etc) and place the person’s hand on the back or the arm of the chair, so that they are aware of the position of it. ! At the end of a conversation, do not just leave. Say when you wish to end a conversation or to move away. ! Some disabled people have a dual impairment, being both deaf and blind. Make yourself known to them by touching their sleeve gently and then wait until they have indicated the type of help they require, if any. ! If in a noisy place, speak louder and directly towards the visually impaired person. However, generally, you don’t need to shout! ! Consider other formats for communicating, if the obvious ones are not open to you. ! Always say what you want, as gestures are useless communication tools to most visually impaired people. ! Always talk to the visually impaired person and not to his or her guide dog!

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People with speech impairments ! Make eye contact and be especially attentive and patient with a person who has difficulty speaking or who uses a communicator. Wait quietly and listen whilst the person talks. ! Resist the temptation to speak for the person, or to finish their sentences. ! Some people may prefer to be asked questions which require either a short answer, or a nod or shake of the head. ! Be sure you understand fully what the person is meaning before making any assumptions. It may help to say what you have understood and ask the person to repeat the rest. ! Ask simpler/shorter questions rather than ones, which rely on a long answer if meeting person for the first time (if this is appropriate). ! If you don’t understand what is being said, don’t be afraid /embarrassed to ask the person to repeat itmaybe several times. People are usually used to repeating what they say. ! Don’t make assumptions about the person’s hearing or intellect just because he or she has difficult speaking. ! If noisy, take account of this and, if possible, move to a quieter area. ! Be aware that the person’s first language might not be English. ! Do not rush the person. Patience and respect for what they have to say is very important.

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People who are hearing impaired ! Do not make assumptions about a person’s ability to communicate or the way in which they do so. Always ask the person to tell you which method they prefer to use. ! Remember that for many deaf people, sign language is their first language and is therefore the preferred method of communication. ! If an interpreter is present, remember to speak to the person you are meeting, rather than to the interpreter. ! It may seem obvious but speak in your usual voice and make eye contact when talking to a hearing impaired person. ! Should there be difficulties in communicating, written notes can sometimes be used (but remember English may not be the person’s first language). Lip reading ! Do not assume that everyone who is hearing impaired can lip read. Always ask the person when you meet him/her. ! If he/she does lip read, remember the skill is never wholly reliable and requires intense concentration. It is very tiring. ! Look directly at the person and speak slowly and clearly but do not exaggerate or shout. ! Use facial expressions, gestures and body movements with care to emphasise the words (only 3 out of 10 words are visible on the lips). ! Face the light and keep hands, cigarettes and food away from your face when speaking. ! To attract the person’s attention, do so with a light touch on their shoulder, or a wave of the hand.

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People with Autistic Spectrum disorders with or without associated learning difficulties. Autism is primarily a social and communication disorder because of this; many of the needs are similar to those of people with speech impairments. Some ASD people are verbal, some are not. In addition: ! The person with ASD may not be aware of social boundaries and/or body language. ! Some people with ASD are uncomfortable making or receiving direct eye contact and feel intimidated by it. ! The person can appear aloof and indifferent- do not take offence. ! The person may not respect your own personal boundaries, be prepared to correct the person kindly but firmly. ! The person maybe very literal in their verbal understanding, always be clear and unambiguous in imparting information or instruction. Avoid the use of similes or figures of speech as well as phrases with two meanings. ! Minimise your use of facial expression, gesture and exaggerated body language. ! Some people with ASD who have no speech but may use a form of sign language. They may however still understand verbal interaction. Do not make assumptions about intellect, just because the person has communication difficulties. ! Some people may prefer to be asked questions which require a short answer or a nod or shake of the head. ! Some ASD people do not like to be touched in any way. Do not assume he/she will wish to shake hands. It may be very uncomfortable and distressing to have physical contact. Ask first! ! Many people with ASD are sound sensitive so if it is noisy offer to move to a quieter area. ! Do not rush the person, have patience and respect for what the person has to say. ! Ask politely if things have been understood, and reinforce information or instructions by asking him/her to repeat them back if able to do so.

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If you would like further information, please contact Grant Power, Access Officer, Social Services Department, Civic Centre, Dagenham, Essex RM10 7BN Tel: 0208 227 2313, Fax 0208 227 2241, Textphone 0208 227 2462 E:Mail [email protected] Mandy Hooper, Development Manager, B&D CIIIL Consortium, St George’s Centre, St George’s Road, Dagenham, Essex RM9 5JB Tel: 0208 227 5412, Fax 0208 592 6686 Textphone 0208 592 6684 E:Mail [email protected]

Remember! The most difficult barrier faced by disabled people can be other people’s attitudes.

Don’t let yourself be a barrier to DISABILITY EQUALITY.

With grateful thanks to the Disability and Independent Living Movement

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This guidance is supported by:-

P.A.C.T. Parents Liaison Group

Access Group of Barking & Dagenham.

Barking & Dagenham Talking Newspapers.

Osborne Partnership.

Published July 2001